Rare Visions

Rare Visions
Poetry by people living with rare eye disease

It has been an awe-inspiring journey to read and engage with the powerful voices of these poets, who have shared their experiences of visual impairment and vision loss. Each poem is a testament not only to their profound resilience but also to the creative expression they’ve cultivated. On one hand, I have learned so much—like a student, gaining insights into the lived experiences of vision loss. On the other hand, I’ve been deeply moved by the raw struggles and triumphs they convey. What strikes me most is that these artists have found ways to express themselves with a stunning clarity, originality, and beauty that far surpasses expectation. The heart of this book beats with their stories, and through these poems, my own heart has shifted, humbling me to appreciate the light these great voices shine into the world. It’s a privilege to be part of giving these brilliant young people a platform for their voices to be heard.

James A. Levine, MD, PhD, Professor
President, Fondation Ipsen

About the author

Roopa Ramamoorthi is a scientist and published poet as well as director for the Catalyst program and Invent fund at UCSF. Her poetry essays and short stories have appeared in over 80 publication including various anthologies and Perspectives on NPR. Most recently she conducted poetry workshops with people living with rare diseases and the collection Rare Sounds was published by the Ipsen Foundation. She feels honored to have now worked with those with Rare Eye Diseases and to help send their voices out into the world.

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